Greeno and Vino

I am starting to appreciate these Target gift cards from Hopkins more and more.  This SEED study is no joke, at least once a week I get a new packet in the mail to fill out, and every other week I have an interview of some type.  And I am not just talking a few quick questions, next week's interview is maternal history and I have been told to expect it to take approximately 2 hours.  Two weeks after that is Nate's developmental history- how long is this one?  4 hours.  And then it's in to the hospital for all of the hands on testing- that is 8 hours.  I get now why the gift cards are necessary to make this study happen in any significant capacity. This is a major commitment for any family.  I would still do it for nothing, but I can see how it would be difficult for families to complete all of this with no motivation other than helping humanity and maybe gaining some insight for their families.  That insight, in my eyes, is worth it's weight in gold, but not everyone would see it that way.  So anyhoo, it's nice to see the gift card in the mail when you realize that $20 is really not that much for 2 full hours of data collection from a parent who could be using that time to help their special needs child. I am thinking that it would be a good idea to save the gift cards to use for appropriate developmental toys for Nate, or for equipment his therapists recommend.  You can find almost anything on target.com.  

When I got this packet in the mail, I realized just how much my prenatal care is about to be scrutinized.  Not to mention my health prior to my pregnancy.  And because I breastfed  Nathan, my health status will be followed for the full amount of time I was nursing- which is an additional 15 months.  Of course I did everything I could to be healthy during my pregnancy and while nursing.  I am glad that I can honestly answer that I didn't have one drink or smoke at all during my pregnancy.  Maybe a few glasses of wine while nursing, but I was always careful to pump and dump.  I never took any medication stronger than tylenol or benadryl.  As a matter of fact, when I weaned Nathan and realized I could finally have advil, I was on cloud 9.  Talk about medication naive.  I had to keep reminding myself that if I had a headache, I didn't have to just sit with it.  That being said, when I started to think through my pregnancy, I remembered a few things. For instance, when I was about 20 weeks pregnant, I got a bad case of food poisoning and ended up in labor and delivery twice for IV fluids and IV zofran.  I also took zofran for nausea during my first trimester.  Without it, I would get sick up to 8 times a day- pretty intolerable with a 2 year old and a full-time job. This of course freaks me out- I mean, moms thought thalidomide was safe in the 70's right?  Now thalidomide is used to treat cancer....how about that?  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001053/  But so far, no significant negative effects are known about zofran, it is supposed to be perfectly safe to use during pregnancy.  http://www.drugs.com/zofran.html  Even knowing this, if I could go back, I would take the pukey feeling. I would take that over this feeling of worry that I caused problems for my baby.  

So on the same day that I got this packet, I got the notice that it is time for Nate's next infants and toddlers meeting soon.  This is his....wait for it....one year progress report (by the way this also makes it my 6 month blogiversary- and with over 7000 views I just want to thank all of you who read- I really appreciate your support).  Can I skip it?  Honestly.  I don't want to go.  I don't want to see sympathetic faces.  I don't want to hear a bunch of half truths and empty reassurances.  I know the score.  He should be a lot further along than he is at this point.  He should be verbalizing much more than he is.  I don't need to hear it from someone else, I know.  This is with 5 days a week of ABA, 2 days a week of OT, constant work and encouragement at home, and wonderful support people within the family.  I can not think of much else we could do other than wake him up and perform drills in the middle of the night.  And I don't think that would be very effective.  Especially when mommy passes out in the middle of it all.  We also need to have the conversation about where he will go in December, when he turns three.  John and I have to attend an information session about our options soon.  Am I scared about this?  Yup.  Because I want them to tell me that there is a circus of intervention available around the corner, and at this point, no matter what is offered, it's not going to feel like enough.  I want an army of practitioners all focused on him, telling us what to do, figuring him out.  Is this unreasonable?  Of course.  Do I care?  Not one bit.  I got a call from the insurance coordinator at the boys' OT last week telling me that almost all of Nathan's covered visits for the year have been exhausted.  I find it absurd that we are allotted 60 visits for therapy- this is not just OT- this is OT, PT and speech combined.  So if he had to have all three, he could only have 20 visits of each per year?  How effective would that be?  I called the insurance company to see how we go about getting additional visits approved.  It turns out that the county (my husband works for the county) HR department has to approve it.  I have never heard of this- keep your fingers crossed that they work with us on it.  I am prepared to throw a fit if necessary, or sick our pediatrician on them.  We started our "speak smooth" supplement 2 days ago- Nate is taking it very easily.  John and I keep joking in the evenings that he is going to wake up tomorrow and tell us good morning.  Wishful thinking.  I am hearing the mom's of all of the kids that were born in the three months after Nate talk about their little ones' first days of preschool, many of them are attending the same school that their older sibling went to.  And I realize how much I have been insulating myself from people with kids Nate's age.  I almost don't even realize how far behind he is at this point because of it.  Self preservation.  I'm not ashamed of it- it's just another aspect of the "new normal".  My kid is not going to do these same things- but as I have said before, that doesn't make his accomplishments any less special.  

So I could have chosen to dwell on all of these issues all evening.  I certainly had enough to think about to pass the time- last night and many many more evenings.  But last night I had more "important" things to do.  Recently, the play group that we have been a part of since Jack was about 3 months old has for all intents and purposes, disbanded.  Most of the kids are in school, and even when they are not, we are all running around like freaks trying to get a million things done.  So we did what we should have, in my opinion, done years ago.  We changed our online schedule from playgroup Fridays to mommy's night out once a month.  On the books.  Mommy time.  Every month.  Praise God!  So instead of completing study paperwork, or worrying about our impending meetings, or insurance hurdles, I went out to a wine bar with 8 of my favorite ladies.  This was not just for fun- this was a necessity.  Mommy's medicine.  Always great to catch up with the people who have seen you in stained sweats, greasy ponytails, with bags under your eyes, and a really BAD attitude and still like you!  Oh, and to put on real clothes and makeup for a change too. 

We all look possessed in this picture....oh well

We clean up pretty well if I do say so myself.  Thanks ladies for a great night- looking forward to "mommy play group" from here on out!  Even though I have a killer headache this morning.

Family Time

Quiet weekend on the home front.  Kind of nice for a change.  I continue to believe that if I had a three day weekend every week my house might actually be clean.  Oh well.  The family spent some time with each of the grandparents- my parents on Sunday and John's mom today.  It's been awhile since we have had the time to just sit down and have a meal with each side of the family and it was really nice.  Lately whenever John or I see our respective parents we are running out the door to an appointment or a meeting.  It was nice to stay put and enjoy each other's company.  AND  I didn't have to cook two meals.  :-)

I am very impressed by how much everyone has respected the boys' diets in our family.  I hear stories all the time about families not only not providing food the kids could eat but even giving them "contraband" foods.  My mom cooked a fully gluten and dairy free dinner including dessert.  Even John liked the dessert and he generally avoids gluten free sweets like the plague.  So that's a major compliment.  John's mom had multiple things both boys could eat for brunch this morning and had bought some special bars for them, which I allowed Natey to eat.  He rarely gets anything sweet, so he gobbled it up.

I was commenting to my mother in law this morning that I am amazed at the antics all of the grandparents are willing to put on in order to entertain the kids.  There is no way any of this would have happened when WE were kids!!!  For instance, yesterday my mother was looking at a book she bought especially for Jack that is full of different bird calls (it has the audio).  He is so obsessed with the book that we have to set the timer before they start looking at it, otherwise they could be there all day.  Anyway, I look over and my mom is sitting there with her head on the couch and looks like she's sleeping.  I asked her what she was doing, if she was ok.  She whispered to me that Jack wanted her to pretend she was asleep and to then pretend she was surprised by the bird call when he pressed the audio button.  So he presses the button for one of the many varieties of Orioles contained in the book and my mom's head shoots up and she gasps in a very surprised voice.  Then she puts her head back down and pretends to be asleep.  Repeat, repeat, repeat.  What would she have said if I wanted her to do this when I was a child?  Well first of all, she wouldn't have bought a book with audio because she would have had to listen to it continuously since we never "went home".  But I can guarantee that she would not have been collapsing onto the couch just to appease me.  I love it!  She also does a mean humpback whale impression, which she had to repeat for months last winter.  Ha. And John's mom is always "flying" around our house pretending to be one plane or another.  Or pretending to be the mama allosaurus while Jack is the baby.  Today she was schooled on chinstrap penguins, and white lions for hours.  While John and I stared at each other in relief that we were getting a break from all of the "knowledge".  I'm lying.  Actually we were chasing Nathan up and down the stairs and standing over him trying to force him to say words.  What can I say?  We rarely get that kind of opportunity when Jack is around- he never stops talking.  Seriously.  Never.  We were working on "go up" and "go down".  Right now he pretty much sounds like he is saying "gum".  Hey, it's something.

Nate's pediatrician recommended a new supplement when I took him for his checkup last week.  It's called speak smooth.  http://www.speechnutrients.com/.  Not going to hurt him- it's mainly concentrated omegas and vitamin E.  So waiting for that to come in the mail.  Oh and I finally bit the bullet and ordered melatonin to try with Jack.  Mommy and daddy need some freaking sleep.  Pray for us that this works.  This is one of those kids who becomes hyper with benadryl.

We have had a pleasant surprise with Nathan as of late.  He kept disappearing; he often wanders around by himself, so I didn't think much of it.  But I could hear him babbling on the monitor so I went up to his room to check on him.  I found him "reading" books.  We have never really been able to get him to focus on books, except at bedtime.  But for about the past week, every time he wanders off that's where he goes.  There are books all over the house, our room, the living room, the dining room, the kitchen.  And he just keeps picking them up and looking at them.  I consider this a very good sign.  He has also figured out how to climb up into our big bow window in the living room.  Here is how I found him on Sunday morning...

After "reading" for awhile we switched to blocks.  A symptom of autism is the whole "lining things up" thing right?  Yeah, this kid does NOT have that!  As a matter of fact, I can't even put the blocks next to each other without him knocking them around.  He likes chaos :-).  He is in the right house.

Jack joined us for some bouncing on the trampoline.  He has another loose tooth and one of his "grown up" teeth is coming in.  It looks HUGE

Lazy weekends are unheard of around here.  It was really nice to kind of sit back and relax.  We actually had two days where we didn't have to get the kids out the door by 8am.  That was really nice!  Tomorrow is the first day that they both go to school.  This house is going to be so incredibly quiet! Will need even more coffee than usual.  

God Blessed Me This Morning

Today was Nate's first day back at ABA in about a month.  Not exactly as earth shattering as a first day of kindergarten, but very important nonetheless.  Every day that he goes to "school" I count as a lucky day.  We are so fortunate to live in a county with such a wonderful program, and I have actually been stressed out that he has not been going this past month.  And I wanted to document it, make a big deal of it for him too.  I honestly don't think he notices, but it matters to me.

I have talked before of the trials of photographing a child on the spectrum.  Jack is SO MUCH BETTER these day, as evidenced by yesterday's pictures.  Nathan- is a real challenge.  Getting him to look at the camera feels like an Olympic event.  But better to have the occasion documented with him staring into space than not at all right?

As you can see, it was not going so swimmingly.  But once again, at least he was in front of the door like Jack.  I really wanted a picture of us together.  That is asking A LOT.  Especially since I was the only grownup in the house

 

At first I really though that this was as good as it would get.  I tried with him outside and it was just too distracting. I couldn't get him to hold still long enough to get us both in the frame.  I was using my i-phone.  It has the "flip" option for taking a picture of yourself, basically, when you view the screen using this option it's like looking in a mirror.  See Nate in the above picture?  He has just noticed he can see himself and mommy.  And here is what happened....

Are these the best pictures in the history of the world?  Maybe not to you.  To me, the answer is a resounding YES!!!  Thank you God for giving me a few pictures with my littlest boy.  These pictures mean the world to me.

Have a good day buddy!

Fly Away My Little Plane!!

Well today was the day we put our little boy on the bus.  Dry eyes?  Not a chance.  Fear?  Immense.  Hope?  You betcha!  We went to Folger yesterday to meet the teacher and Jack did beautifully.  He was polite and well-behaved.  And mommy got to get a picture of Jack and Daddy in front of the elementary school that they have now both gone to- so cool.  While I was talking to the teacher, Jack was asked to write his name and draw a picture of himself.  He did both with no prompting or reminding.  I don't know if that's typical or not- but to me it felt extraordinary.  My boy follows directions and completes tasks- Score!  We were able to work on little things like how to open a locker, etc, which actually gave me some comfort- and I know they will help them these first few weeks.  It's new for all the kids.  We also had the opportunity to meet the special educator, who made the effort to come find us and introduce herself.  We also received a letter from his OT.  A good start...

Jack really seemed to get that this is a big deal.  He has watched me assembling all of his supplies, labeling everything except his actual body, packing his lunch, etc.  He's been talking about the bus for a long time, and was so excited to get to ride finally.  He did ask multiple times if I would be coming with him, but seemed to accept it when I told him he had to go with the other kids.  

It was very reassuring to me that all of the kindergarten kids have these on their backpacks- have been so worried about him getting lost in the shuffle!

I won't deny that I was a little shaky this morning while packing his lunch and getting him dressed.  I was talking to a male coworker of mine yesterday, and we agreed that at a milestone like this one, all you can picture is your guy as an infant.  It's especially poignant for me to put him on the bus because we used to walk past this exact bus stop every morning before work and watch the kids.  Jack would sometimes cry to get on the bus too.  I would say "someday when you're big".  He's not big!!!!  Well, I guess he is....he seems so small to me.

Jack got on the bus, no muss no fuss, in fact he told daddy to stop holding his hand.  John and I looked at each other like, sniff, sniff.  But I am extremely proud of him.  So he wandered all the way to the back of the bus and then back to the front when the driver called him....so what?  He was brave!  I would like to say that I didn't follow the bus- well I guess that technically I didn't.  John and I drove straight to the school and hid so that we could watch him get off of the bus, make sure he got where he needed to be.  There were an army of teachers waiting for the kindergarten kids.  Seemed almost like 1 person to each kid as they got off the bus.  We could see Jack just talking and talking away to everyone around him.  No tears, no resistance.  He was ready to go!  We must be doing something right.....

Sending any child to school, on a bus, for the first time is very nerve wracking.  Add special needs to the picture and it feels like you are climbing Mount Everest.  I know that I'm a worry wart and I don't apologize for it- Jack needs for me to worry.  He needs someone in his corner, advocating for him.  I worry he won't pay attention, I worry he will get lost, I worry he will be bullied.  But I know that he will try to do what is asked of him, and that I have prepared him in the best way I have known how.  John and I could not be any prouder of our little boy today.

One of my coworkers and best friends sent me this letter this morning.  Her aunt sent it to her on her son's first day of school (maybe 25 years ago).  And today she shared it with me. She also gave me permission to share it with you....and yes, you will cry!

Dear Teacher,

My son starts to school this week.

It's all going to be strange and new to him for awhile, and I wish you would sort of treat him gently.  He's been boss of the backyard, I have always been around to repair his wounds and I've always been handy to soothe his feelings.  But now. . . things are going to be different.  He is going to walk down the front steps, wave his hand, and start on his great adventure that probably will include wars and tragedy and sorrow.  To live his life in the world he has to live in, will require faith and love and courage. 

So, teacher, I wish you would sort of take him by his young hand and teach him the things he will have to know.  Teach him. . . but gently --- if you can.  He will have to learn, I know, that all men are not just, that all men are not true. 

Teach him that for every scoundrel, there is a hero, that for every crooked politician there is a dedicated leader.  Teach him that for every enemy there is a friend.  Let him learn early that bullies are the easiest people to lick. 

Teach him the wonders of books.  Give him the quiet time to ponder the eternal mystery of birds in the sky, bees in the sun, and flowers on a green hill.

Teach him that it is far more honorable to fail than to cheat.  Teach him to have faith in his own ideas, even if everyone tells him they are wrong.

Try to give my son the strength not to follow the crowd when everyone else is getting on the bandwagon.  Teach him to listen to all men, but to filter all her hears on a screen of truth and then take only the good that comes through.

Teach him to sell his brawn and brains to the highest bidder, but never put a price tag on his heart and soul.

Teach him to close his ears to a howling mob, and to stand and fight if he thinks he's right.

Teach him gently, but don't coddle him, because only the test of fire makes fine steel.

This is a big order, teacher, but see what you can do.
He's such a nice, little fellow, my son.

A Mother

One Finish Line....

I have heard so many times just how lucky I am to work from home.  And I agree 100%.  Between going to the boys' appointments, being here for deliveries and service appointments, and having unlimited good coffee, it's a pretty sweet deal.  Today however, I would like to pay tribute to what my life has been like since Jack was born.  Since he was an infant, I have had daycare until approximately 2:00pm each day.  There have been short periods where I have asked the sitter to stay later, but for the most part this has been it.  So I have daycare 6hrs a day.  Before Nathan was born, I actually had some people ask me if daycare was really necessary.  Couldn't Jack just "hang out" while I do that little job of mine?  BAH!  I say BAH!  Would you bring your child to work every single day and let them "hang out" during your meetings?  Listen to you talk about serious medical issues that are not always very appetizing?  Let your clients listen to them scream in the background and demand more PB&J?  Didn't think so.  This is not some "little job" or hobby of mine.  One of our first sitters would at times act like I was doing nothing all day, or make comments that it was nice that I could have that time to myself and keep my hand in my area of interest.  Used to make me so mad!  I work a 40 hour a week REAL job.  I am not one to toot my own horn, but finally one day, after months of hearing this, I pulled her aside and explained to her that this was basically a 50/50 husband/wife scenario.  She never mentioned it again.

That being said, I have used working from home as an opportunity to save a bit on daycare.  My husband happens to get home fairly early from work, so if I have more calls to make, I can make them once he gets home.  Or, as I have mentioned before, lock myself in the bathroom.  It's very glamorous, this "career" of mine.

So we are nearing one finish line of sorts....Jack- full day kindergarten. His school has the "late" start time, which means he will not be getting off the bus to come home until 3:50pm.  What?!?!  First of all, I am concerned about him handling this late of a day.  But honestly, the thing that first comes to mind is Free at Last!!!!!!  Jack is an awesome kid- he is also an incredibly verbal kid.  With zero concept of quiet, inside voice, whisper, etc.  At least not at home; he did pretty well at school after awhile last year.  I try like anything to have all of my important calls for the day made before the sitter leaves, or to schedule them for after John is home.  The best laid plans.....never work.  I have found myself working in some very awkward situations over the past 5 years.  Locked in my office with both kids screaming and pounding on the door while I talk to the medical director in a calm, professional manner (yes, of course my kids will both need therapy, sigh), throwing stuff in the crock pot while talking to another coordinator, stopping the spin cycle on my washing machine every time I receive an incoming call (yes, my office is in the laundry room- talk about your glamour).  Or there was that period where Jack would wait until the sitter left, defecate, and decorate.  At 2:45 almost daily.  Even with all of the precautions I would take.  Those days were ROUGH.  Bottom line- I am a survivor!

What will the days be like now?  Both boys to school by 9am.  I will still have to have the sitter right now b/c Nathan has to be driven back and forth to ABA until he is 3, at which time he too will go on a bus.  Nathan takes a NAP in the afternoon.  Jack will be at school until almost 4pm?  Seriously??? My spreadsheets are going to be spotless!  My nerves will no longer be fried!  I will not be redirecting a small child every 5 seconds with my hands while trying to talk to someone like a grown up!  Like I said.....FREEDOM!

Things I will not miss:

about 30 seconds later.....

and about 5 minutes later.....

Those are the things I WON'T miss.  Does this mean I won't cry like a baby when I put him on that bus?  Ha, I am sure you all know better by now....

Just What the Doctor Ordered...

So much to say, so much to say.  First I would have to say that John has earned the husband gold star for the day.  Not only did he watch the boys for 12 hours so that I could embark on this trip down memory lane, but when the power went out (yes, you read that correctly, the power went out AGAIN), his text to me said, and I quote "we will be fine hon, don't worry".  That means more than all the flowers in the world.  LOVE YOU and thank you!  And luckily, THIS time it was only a few hours....

So today I headed "home" for the day.  The main purpose of the trip was to attend one of my oldest friend's baby shower, but being the multi-tasker that I am, I managed to cram this day as full of meaning as I possibly could.  I took my mom with me, it was our first outing without the boys since, well, since Jack was born (that would be 5 years people).  It was also my first trip back home since before John and I got engaged- so that would be 10 years.  Holy Moly!

yep, no resemblance at all...

When I tell people I'm from "Jersey" I know that it conjures up a certain image.  Smoke stacks right?  Allow me to introduce you to my New Jersey- Medford Lakes....1 square mile, 5 beaches, countless bike trails, 1 golf course, 1 "trading post", 1 church, 1 police station, 2 elementary/middle schools.  And that is ALL.

our old house....

Some pictures of our town.....

bike path

beach

So as you can see, it's beautiful.  I was very very lucky to grow up here (at least from age 10 on).  Our little neighborhood was especially tight, I had three "moms" and "dads", and felt completely at ease walking into all of those homes unannounced.  I babysat all of the kids in the neighborhood, most since infancy.  And yes, they have all pretty much graduated from college at this point, gasp, I am OLD!  My mom and I met up with one of my other "moms" (and a close friend of the whole family) for brunch today.  It was just wonderful.

Meet dad #2, Dan.  Hilarious guy who is currently working with mom #2 on completely gutting house #3 that they have renovated in Medford Lakes.  I will never forget the first time I babysat at their house- I was 14....the first thing he said to me was "stay out of the liquor cabinet!".  You have to know me pretty well to understand just how absurd of a statement this was.  I was pretty tame.  Of course, he also happened to spot me the ONE time I smoked a cigarette in high school, and I was like a mile from our house- he held it over my head for YEARS.  I told my mom about it today, ha.

Here is mom #2 Bobbie- we had an awesome brunch and had a chance to catch up.  Hadn't seen her since my wedding day!  Love her!

After brunch we headed over to my friend Pam's childhood home.  Pam is one of my oldest friends, one of the first people I met when I moved to New Jersey.  We were 10.  We have been lucky enough to stay in pretty close touch- she moved to Annapolis shortly after Jack was born, and just recently left me to move to North Carolina with her husband.  Sigh, if you must :).  I have never been so happy to see one of my friends preggers!  She looks fabulous, and there's just something about seeing an old friend so happy....

I asked her today if she remembers why her nickname was Pamer, and she had no idea either....

gorgeous pregnant lady!

mom won!

Pamer and her mommy!

Despite 6 hours in the car, today left me feeling so invigorated!  I forgot how much it means to feel like you're "home".  I forgot how great it is to drive down a street and have a hundred memories come to mind.  I think I need to go home more often!